DNA profiles and other genetic records contain particularly sensitive personal information that can impact employment decisions, insurance availability, and even criminal justice outcomes. Many states have passed laws governing the use of genetic data, but most of these laws do not provide meaningful safeguards or limit the use of genetic information. EPIC has litigated and advocated to establish stronger privacy safeguards for genetic information.
Exemplary Law: Alaska Genetic Privacy Act
The Alaska Genetic Privacy Act S18.13.010-100 is a comprehensive genetic privacy law. It strictly limits genetic testing as well as access to, retention and disclosure of genetic data without the "informed and written consent" of the individual. The law also recognizes that both the genetic information and the DNA samples collected are the property of the individual, and provides for both civil and criminal penalties for violations genetic privacy rights.
What's Missing from Alaska's Law?
While Alaska's Genetic Privacy Act limits genetic testing, it does contain a blanket exception for DNA samples collected "for a law enforcement purpose" and pursuant to the state DNA identification system for criminal justice. Additionally, it does not give individuals a right to their data.
- EPIC: Genetic Privacy
- EPIC: Maryland v. King
- National Conference of State Legislatures (NCSL): DNA Arrestee Laws.
- NCSL: Genetic Privacy Laws (last updated January 2008).
- Presidential Commission for the Study of Bioethical Issues, Privacy and Progress in Whole Genome Sequencing (Oct. 2012).
- Emily C. Barbour, Cong. Research Serv., RL 41847, DNA Databanking: Selected Fourth Amendment Issues and Analysis (2011)
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Privacy Law Sourcebook (2016)